Glasses!

I mentioned in my last post that Kayla got new glasses.  They are for safety, not necessity.  Since she can only really see out of her right eye, having glasses will be just added protection to that eye.

She is still a little shy about wearing them.  It took me a few days to actually get a picture of her.  They are super cute!

January 16th - MRI #4

The events of last Wednesday started at about 1AM.  Before going to bed, I was totally unable to get Kayla to take zofran.  She was being super stubborn about it.  Bryson was gone to a meeting and I was getting all the kids into bed.  So, I didn't have a lot of extra time to coax her into taking it.  So, at about 1AM, Kayla came running into our bathroom . . . throwing up.  She told me that if she woke up throwing up, she'd take a "pill."  But, as usual, she went back on that offer.  She was throwing up for over three hours every five, maybe ten minutes.  I was just too tired to fight with her.  I told her to let me know if she was ready to take a pill and be done throwing up.

I got up and helped her a few of the times, but then I just went back to bed.  I couldn't sleep, but I just lay there listening to her throw up, flush, rinse her mouth and brush her teeth.  Sometimes she would go back to her bed, but after awhile, she was so tired, she would just lay on the bathroom floor asleep until she had to throw up again.  As I write this now, it is easy to have sympathy for her, but at the time I was thinking that she was just so stubborn and I was not going to spend all night helping her throw up.

I had put a zofran in her water cup, so finally, I was able to convince her to take a few sips of water.  By 4AM or so, I think she had drunk enough of the water/zofran to help the nausea pass.  Ahhh, now I could finally go to sleep - just kidding.  Benson woke up right after I was certain Kayla was down for the night, and he wanted to read stories.  I was up with him for awhile before he went back to sleep.  I think it was close to 6AM now.  At 6:30, Nathan and Lily were up getting ready for school and I heard Kayla throw up a couple more times.  The last couple times, she just stayed in bed and threw up in her bowl.  There wasn't much to throw up anyway, then she'd go back to sleep.

So, then Sadie was awake, the kids were off to school, and Kayla was still throwing up - more regularly again, I think what little zofran she got had worn off.  The only good thing about Kayla's nausea was that her MRI wasn't until 1PM and she couldn't have anything to eat or drink before hand.  That wasn't hard.

At around 8:30AM, I called the clinic to see if they could give Kayla some IV zofran when they accessed her later that morning.  The nurse said that it would be no problem, and scheduled us to come in a half hour earlier, at 11AM.  Great!  Then, in my zombie state, I realized that I didn't have a babysitter for Benson.  I was worried about getting him one for the day before - for clinic day - but I didn't get one for the MRI.  Now I am imagining taking him with me and feeling a little overwhelmed.  I am so blessed to have wonderful friends, though, who are always there to help me out.  I called my good friend and asked her if she could watch Benson.  I also realized that we wouldn't be home when Nathan and Lily got home from school, so I asked her if they could go to her house.  A HUGE wave a relief and gratitude passed over me when that got taken care of!!  

So, I got us all packed up, dropped off Benson off and headed to the clinic.  Kayla threw up twice in her bowl on the way there, but the nurses were able to get her accessed and get her zofran before she threw up again.  It made me tear up a little just watching how loving and caring the nurses are that take care of her.  They are the best. 

Kayla was pretty tired when we got to the clinic, so here she is in the lobby . . . she was curled up so cute that I wanted to take a picture, but she didn't want one, so she put her foot up to block it.

We had about a half hour to hang out at the clinic before we needed to go over to the hospital.  The nurse at the clinic called transport at the hospital to come and pick up Kayla in a wagon.  She was happy about that.  And she was feeling better with the help of the zofran.  We learned that there is a "secret" tunnel between the clinic and the hospital, so we didn't have to go out in the FREEZING cold weather (it has been ridiculously cold here for way too long!).

At the hospital, Kayla got registered and then they took us down to the MRI section.  Everything went smoothly getting ready for the MRI.  We talked to a nurse, the anesthesiologist, and the nurse anesthetist.  Then she went in for her MRI.  This picture is Kayla playing with some magnet toys before the MRI.  She still didn't want to smile. 

The other eventful part of our day was Sadie.  I knew that she had messed her diaper while Kayla was preparing for the MRI, but by the time I was able to change her diaper she had leaked through on to all of her clothes.  Unfortunately, she did the same thing the day before and I used her extra set of clothes from my bag and didn't replace them.  So, she had to go by diaper. . .

When the MRI was done, Sadie and I went to the recovery room with Kayla.  The sweet nurses there gave me a hospital gown to put on Sadie.  We also saw one of the nurses that we have seen a few times before, so it was fun to visit with her.

Kayla woke up fine and we were soon on our way.  I had gotten a call that morning telling me that Kayla's glasses were in, so we stopped by and picked them up.  It ended up being after 5PM before we got home that day. . . so I was also grateful to have my good friend offer dinner to us.   It was a long week. . .

January 15th - Week 37

Tuesday morning, we had to leave by 8:30AM.  After Nathan and Lily were on the bus, I got everything (and everyone) packed up to go.  Benson went to another friend's house for the day and Kayla, Sadie and I were on our way.

We got to the clinic, got checked in, accessed and met with Marnie.  When Kayla's blood counts came back, they were good enough to start a new cycle of treatment.  Yay!  So, we were staying for the day.  It still took a little while to get her fluids started, so that always makes the day a little longer.

Kayla's next MRI was the next day.  For anesthesia, they typically have a gas mask.  But, Kayla does not like those.  She prefers to be accessed and have the medicine go through her port.  Our past few experiences with getting accessed at the hospital have taken forever.  They don't do it a lot, and have to track down the right kind of needle.  So, I asked Marnie, and then another nurse, if it would be possible to just stop at the clinic before her MRI, get accessed and then go over to the hospital.  I thought it might be easier for everyone.  The nurse said that would be totally possible and set us up an appointment to come in at 11:30AM the next day (Kayla's MRI was at 1PM).  Great!  

Well, our usual spot was taken in the chemo suite, so we were in the other room in one of the chairs.  Kayla didn't seem to mind.  I didn't mind either because there was a normal chair for me to sit in, instead of being at a kiddie table all day.  Kayla brought her new movie, "Barbie and the Diamond Castle" to watch while we were there.  I have to admit, I really like that movie, too. :)  It has some great songs in it that are always stuck in my head.

Sadie was an angel and slept for most of the time we were there.  I was able to make some calls to get dinner arranged for someone in the ward and get some fun reading in.  

I tried to get some pictures of Kayla. . . she hid behind her pretzels. . . 

                                     

Once Sadie was awake, Kayla was more in a mood to take a picture.

Kayla played with a fun Little People dollhouse towards the end of the day.  She also painted a magnet, colored, and worked in a preschool book with me.

Kayla finally got done sometime after 4PM.  By the time we drove home, picked up kids, picked up dinner from my visiting teacher, and got home, it was after 5PM.  What a long day!  Then I got a call from the person taking dinner to someone in our ward and her car wouldn't start.  So, I went over to pick up the dinner and delivered it to a lady in the ward.  She works on Sundays and hasn't been in the ward very long, so I hadn't met her.  I had a really nice time visiting with her, so I was glad that I was able to help out.

By the time I got home, Bryson had to leave for a meeting, so it was a crazy night of getting all the kids in bed.  Actually, I can't remember many details about that. . . I think they get blocked out once the kids are asleep.  :)

January 8th - Not Quite Week 37

Last night, I was starting to feel the stress of packing up for another long day at the clinic.  Needing to pack food, activities, packing for Sadie, on top of being tired from a long day already.  Plus it snowed all day and the roads were icy and terrible.  We would have to leave as soon as we could once Nathan and Lily were on the bus.  Plus my babysitter for Benson fell through and I needed to find another one.  Sigh.

Bryson had two court hearings that were canceled, so he offered to come with us.  That would be nice.  Later last night, he had a brilliant idea - he could take Kayla and I could stay home.  After thinking about that  for about 10 minutes, I felt the stress lift off of my shoulders.  Yes!  Great idea!  I wouldn't have to pack up a zillion things and lug Sadie (I will tell you how much she weighs after her appointment with the doctor tomorrow. . . but it's got to be a lot!) around, drive on icy roads, etc.  Plus, I would get to stay home with just Benson and Sadie and possibly have a nice slow day.  At least as relaxing as possible with a busy two year old boy. ;)

Anyway, I was very grateful that Bryson offered to take Kayla, even though he is super busy with work right now.  What a great guy!!

So, the drive went well (he tells me. . . ) and things went well at the clinic.  They met with Marnie.  Kayla's neutrophil count was up over 2000.  Yay!  But, her platelets were at 80.  Boo.  This was supposed to be the start of a new 6 week cycle, so her platelets need to be at least 100.   So, she just barely missed counts.  That's one more week delay.  On the bright side, though, there will be no battle with zofran this week!  Kayla did get Pentamadine, though, so that was nice.  It takes an hour and when you add an hour on to an already long day, it gets longer. . . so, that is done for another month.

Hopefully by next week her counts will be up.  Although, looking at my calendar, we may have other issues. Next Tuesday, Kayla is scheduled for chemo and next Wednesday she is scheduled to have her next MRI.  The problem comes when she needs to take zofran, but can't eat or drink anything before the MRI.  We'll see how that works out next week. . .

January 3rd - Week 36

Wednesday night, I started feeling sick at dinnertime.  At about 10PM I  threw up and felt a little better.  I hoped this sickness would pass quickly and not pass on to anyone else.

So, Bryson was planning on taking Kayla to the clinic Thursday morning, but he had to be at the courthouse for a hearing at 9AM.  Kayla's appointment was at 10:30AM, so they needed to leave by 9:45AM.  It was going to be tight.  I had made arrangements for Lily to go to a friends house, I I decided to leave those in place, even though I was staying home.

Well, at 9:45AM, I still hadn't heard anything from Bryson, so I figured I had better be prepared to take Kayla.  Nathan wanted to stay home, so I loaded Benson (still in his pj's), Sadie and Kayla in the car and we took off by 10AM.  Right when we got in the car I heard from Bryson, but he was just getting done and still at the courthouse, so we headed to the clinic.  I was feeling better by then, once my adrenaline kicked in. :)

Both Benson and Kayla did great at the clinic.  There was a little bit of juggling going on in the room when we were waiting to meet with Marnie.  Both Kayla and Benson wanted to sit right by me on the office bed-table and I was holding Sadie, too.  It's times like those when I could use a couple extra arms.  Ha ha.

Meeting with Marnie went fine.  Nothing major to talk about.   But, Kayla's counts were lower than last week.  Both her neutrophils (they were 790 and need to be at least 1000) and her platelets (I forgot, but they were under 100) are low.  Too low to do chemo - if it were the day to start a new cycle.  She is supposed to start her next cycle next week, so we really are hoping that they will come up and we don't have another long delay!

So, we left the clinic and were on our way to the parking garage when Kayla asked, "Why do I have to keep this in?"  Oops!  She was never de-accessed.  So, we went back into the clinic and found a nurse to de-access her port.  I am glad that Kayla said something before we left because otherwise, I would have had to do it while being talked through by the nurse. ;)

We made it home and back to our day of cleaning and grocery shopping.  Later that afternoon, the kids told me that someone had pulled up at our house.  Then I remembered that it was a clinic day, which meant my visiting teachers were bringing us dinner.  Thank you!!!

(Kayla, Benson, and Sadie waiting in the lobby with their dum dum suckers they got when Kayla's port was accessed)

Dr. Lee - December 28th

Last Friday, I took Kayla to Dr. Lee (ophthalmologist)  for her appointment.  Kayla is getting comfortable with going there.  On the way over, she told me that she was going to whisper the letters into my ear so that I could tell the doctor what she was seeing and that she was going to get drops in her eyes (for dilation).

Kayla did great at the appointment.  She did whisper the letters in my ear so I could repeat them aloud.  And her eyes did get dilated.  Her right eye tested at 20/20.  Her left eye is still pretty much gone.  She could see the doctor wave her arm up and down or side to side and a close distance (about 2-3 feet), which is about the same.  Her optic nerves are very pale, which is a result of the chemotherapy.  Her left eye is much paler than her right eye.

Dr. Lee talked to me about Kayla wearing safety glasses - since she is a "one-eyed" child.  They would just be regular glasses, with very little prescription (just enough so the insurance would pay for them. . . ) that she would wear to have a little added protection to her good eye.  It would be very bad for something to happen to that eye.    So,  we decided to do that.  I asked Kayla if she would like to wear glasses like Nathan and she said yes.  She picked out a cute little pair of pink frames and will get them in a couple of weeks.

Another thing I talked to Dr. Lee about was her left eye starting to wander - just a tad.  When she looks at me, I can tell that her left eye is not focusing and it is just slightly off.  It's not too noticeable right now, but if it gets worse, that is something they could correct with surgery.  Yuck.  I guess we'll see how things go down the road. . .

December 27th - Week 35

Well, this past week, I did not go to the clinic with Kayla.  Benson was sick with a fever and sore throat and was up just about ALL NIGHT.  Between him and feeding Sadie, I think I got maybe 3 hours of broken up sleep.  Since it was just a short appointment with no chemo, Bryson convinced Kayla to let him take her.

From what Bryson told me, everything went well.  I guess I should have him write this post. ;)  Kayla's counts were low, but good enough to get chemo if it would have been a week to start.  Her platelets were just over 100 and her neutrophils were just over 1000.  So, I hope they come up a bit before she starts the new cycle in two weeks.

Other than that, they did get to meet with Dr. Hansen, but they had to wait for a while because he had an emergency over at the hospital he had to go to.  But he did say that Kayla was looking really good still. :)

My hopes to get a nap were futile.  Benson didn't nap all day, but was ready for bed before 5PM.  He is over his illness now and (knock on wood) it has not spread to anyone else.

Merry Christmas!

We've had a great Christmas so far (the kids still have another week off of school. . . ).  My parents were here for a day before they flew to Texas to spend Christmas with my sister's family.  Here is a picture diary of our Christmas.  We got one of the girls together.

Lily got a little gift from her Primary teacher.  She spent some time making this little ornament.

Nathan had fun making Sadie smile.

We don't get many of these. . . a picture together. :)

On Christmas Eve, the kids decorated gingerbread houses. . . made out of Rice Krispy treats.  I got the idea from my cousin (thanks, Tiffany!) and it was a total hit.  Everyone got to decorate their own and they were yummy to eat.   Here's Kayla's:

And Lily's:

Nathan's:

Benson's:

For Christmas, Bryson got new guitar strings for me and restrung them!  He does not even play the guitar, but after watching a video on YouTube, he successfully put on the new strings.  What a guy!

Our Christmas Eve pajama picture. . .

My cutie matching girls. . . 

Lily and Kayla left presents for Santa:

Kayla loved her Little Mermaid Barbie.

Nathan was excited to finally complete his set of the Percy Jackson books.  He's read the first three like 6 times. . . 

Benson's garbage truck kept him entertained on Christmas morning. :)

Lily became an expert at Legos.

And Sadie got all worn out. . . 

I didn't catch every moment, but we are so grateful for this Christmas season that we have to celebrate the birth of our Savior, Jesus Christ.  We have been through an incredible year and are counting our blessings each day.  

Merry Christmas!

December 18th - Week 34

Today was week four in Kayla's latest chemo cycle.  I can't remember right now how many more cycles she has, but it's four weeks of chemo, two weeks off.  What great timing for her two weeks off to be Christmas and New Years. Yay!  She'll still have to go in to the clinic, but there will be no fights trying to get her to take zofran. :)

We had an early morning appointment today.  Kayla, Sadie and I were out the door by 7:30AM.  I left Benson asleep and Bryson took him to a friend's house once he woke up (who even let him come in underwear. . . potty training has been a little difficult to keep consistent with, but he is doing great).  Thanks! We got to the clinic and Kayla got checked in, accessed and we met with Marnie.

The only thing I asked Marnie about was the results of Kayla's EKG.  Marnie told me that she had seen them and they looked fine, but wanted to talk to Dr. Hansen first.  Kayla's ankles are still fairly weak, from the vincristine, but she can still kind of walk on her heels.  We have been slacking on her physical therapy exercises  . . I guess we need to do better at that.  I normally don't worry too much because she is so active, but with the weather getting colder, we are not quite as active.  Other than that, Kayla looks great.

In the chemo suite, Kayla watched a movie that we brought for a few minutes.  Then Miss Jenn brought her a project to do.  She loves projects. :)  Kayla colored a Christmas tree and then had some paints to put lights and ornaments on the tree.  When she was done with that, Miss Stephanie and Miss Irene came and did music with her.  She wanted to stay on the bed to do it today, instead of the little table.  I got out of their way and Kayla had a lot of fun singing and making up silly songs while playing all of the fun instruments.

Marnie called nurse Penny's phone in the chemo suite and asked to talk to me.  She had talked to Dr. Hansen about the EKG results and wanted to follow up with me.  Marnie told me that the EKG looked good and normal.  So, there was no side affect from giving the zofran and pentamadine together.  My one question I will try to remember to ask next week (and we get to see Dr. Hansen then) if this indicates that each time she gets zofran and pentamadine there will be no risk of heart complications, or if each time there will still be a risk.

After music time, Kayla's lunch came, so we ate.  I put her movie back on and I think she fell asleep, or almost did.  I was able to have a short conversation with my amazing sister-in-law who just delivered twin girls on her bathroom floor a few days ago.  They didn't have time to get to the hospital!  Crazy story. :)

While we were there, Miss Jenn brought in a present for Kayla.  Kayla was busy with music time, so she didn't see what it was.  It is a little pig stuffed animal from Scentsy that you can put a little smelly thing inside. It is really cute.  Since she didn't see it, I am going to wrap it and put it under the tree for her for Christmas.

Miss Jenn (we just love her) came and took Kayla out to the lobby where they had a big wagon full of stuff people had donated.  Kayla filled a stocking with presents for me!  Wow!  She brought it back to me and let me open it.  There was a red kitchen towel , a pink pen, a purple pencil, a little book of activities for kids, a little family plaque, and a gift card for St. Luke's food places/gift shop.  Sometimes I feel like we get super spoiled there.  It really makes me want to donate things to them.  We will definitely be doing that in the future.

Today Kayla only got carboplatin, so between that and starting so early, the day seemed to be shorter.  Plus, comparing it to last weeks marathon day, it seemed really short. :)  We were done just after 1:30PM and headed home.

Ugh.  I took a cute picture of Kayla and Sadie, but my computer is being picky and is not reading my camera card.  I guess I will have to add it later.  By the way, Sadie is so sweet and does so well while we are there.  She sleeps most of the time.  Today, though, she did blow out her diaper.  Nice.

Tonight I have been unsuccessful at getting Kayla to take zofran.  She promised me that she would take it in the middle of the night if she wakes up throwing up.  Sure. . . let the battle begin.

Christmas Lights

Friday night we took the kids out for pizza and then walked around downtown where there is a big light display.  The kids had fun walking around on the lighted path.  There were lights everywhere along the little creek that runs through town.   

They had to get a picture sitting on a big rock. . . 

. . . And since you can't see Sadie in the pictures. . . here's a cute one I took the other day. :)